A new future….

I have always believed in the saying that “The first step of any journey is always the hardest”, it’s taken me years to realise just how wrong that statement is, the first step may be hard, but you can be sure there will be many as hard and some even harder along the way. It doesn’t matter how many times I tell myself and others, that I am at ease with what is happening to me, the facts remain the same, it isn’t that easy or that black and white.

I admit that yes those first few days after I had been told what was wrong with me and what I thought I was facing, were hell itself. I still remember sitting for hours just staring into nothingness and feeling more than just numb, but that is so long ago now that it’s happening now feels as far away from my reality as it did then from my dreams. What I didn’t know then and I am only really coming to terms with is that every time you notice a change it all starts over again. That doesn’t mean you spend your life in a start of grief, far from it, as although there is a constant downwards slope, those moments when you notice the slope and they are the moments when life stops for a few hours and you have to readjust. I know that losing my “voice” isn’t something new, all you have to do is read back through my old posts and it appears not once, but several times, but it’s mentioned because there has been a change that isn’t hidden, but is out there in the open, one that Adam knows about just as well as I do. It easy to hide, even from yourself the daily slips, the odd pain or the extra exhaustion, but it isn’t so easy to hide from your own brain making mistakes that a primary school child would never make. I remember writing a few months ago about noticing that I could no long do basic maths if I had more than two single digit numbers to work with, something I still have to do daily as I can’t help not doing stats on everything I do online. Yes, I do still have pages of spreadsheets, full of numbers and names all working together to not just keep me working through my daily routine, but so I don’t make too many horrid mistakes on twitter. I am reminded every day that I can’t do the things I once didn’t even think about, it may have been a long time since I could totally rely on my brain as much as a calculator, but two numbers, well that was to me a huge issue and sign of things to come. I suppose it was only a matter of time before I could no longer even work out time any longer, if I had been totally honest I was aware it too was going, for a long time now I hadn’t been able to trust myself when it came to counting how many hours were between going to bed and getting up, I counted it out on my fingers, but that was maths, the basic of you have two hours to watch TV, how many shows will fit, a nightly question, to go wrong seems bigger.

It is really hard when you come face to face, in a situation where you can’t cover it up as just a mistake, like, it’s now happened three time in a week with a witness, you have no choice but to deal with it. They are those moments when inside you go cold and your brain goes into a numb explosion, time stops and you are face to face with the monster you knew was there, but you had paid no attention to. On the surface, you recover in seconds, but inside time is still stationary and your dying, your spinning around trying to find the pieces that are missing so you can fix it all, but there is nothing there, just a huge void that has been crossed and there is no way back. Life goes on, you perform just as you have always done, yet still inside you are looking downwards into that void and it feels like it’s pulling your very life force down into it and there is no breaking system, but on you go, you get ready for bed, or make your dinner, whatever is right for that time in the day, but your not there doing it, at least not for now. It can take several days to accept, to reorder your expectations of yourself and your abilities, days that every silent moment is spent fixing, gluing and patching, but most of all grieving for yet another part of you that has gone.

It isn’t just that first step, it’s every single step that is anywhere that isn’t the norm. At times they are separated by months, at other just weeks or even days, you don’t notice them all happening at first, but bit by bit they make themselves known, they happen more, or in a bigger grander fashion, while others snap and their there, or there totally gone. We all have our own expectations of ourselves, we know what is us and what’s not, so when someone tries to tell you your being silly or that it doesn’t matter, it just makes you angry, it does matter, it’s you, it’s you that is breaking and vanishing not them. I don’t care for people who say stupid things like you sound fine to me, well do they even know me, where they there with me when I was at my brightest, my biggest and boldest, did they even know of my existence then, so how do they have the right to say how I seem or how I sound, when it comes to me, they know nothing.

I don’t know how others deal with a body and life that has diminished, what I know is I grieve and I move on. I would go as far as to say that it’s a must, you must grieve, you must get angry and do all the questioning and pain required for each of the caverns that lie behind you, then hold your head high again and start walking through this new life, as that is what it is, it a new life with changed boundaries, changed expectations and a changed reality. It doesn’t matter how small the void or how huge it is, whatever it is, it has an impact so changes have to be made, adjustments that compensate and remove the dangers, but you have to be ready to for them to not work and to have backup plans and alternatives lined up to go. I have learned in the last year that there are things that it doesn’t matter how hard I try, how many plans and back up there are, that there are things that have to be handed over to others to deal with. When it comes to my memory, there is nothing that I can do, to make me do things, taking my pills and showering are just the start of the list, I know that. I have tried everything possible to remind me to do things, but something stops it working, for reasons I can’t find the answer to just having a reminder set up that no one but me sees, just doesn’t work. I either totally ignore it, or I forget I ever saw it. I faced facts and handed Adam the job of forcing me to do what I need to, the future clearly holds a list of things that will also have to become his role to ensure they are done. The solution for functional actions are there, but no one can think for me, speak for me or even write for me, each function I am loosing from adding up numbers, to forgetting the next word and stuttering, I am sure would tell the Nuro’s a story of what is happening to my brain as the lesions do their destructive job and probably what will go next. Knowing make no difference, I knew my brain would stop functioning as it once did, I knew speak and memory were in danger but it doesn’t make any of it easier, every step hurts and every step is a new beginning, in a newly shaped world.

 

Please read my blog from 2 years ago today – 03/11/12 – I’m still here

Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring ……….

Setting up the future

I have just been forced out of routine thanks to the internet. There is a site I use in the morning that is one of the many sites that offer different ways of seeing and managing twitter, but it isn’t working at the moment, so here I am 40 minutes ahead of my norm and now guaranteed to be totally lost and confused for the rest of the day. It’s maddening when things that are totally out of your control just take your life and throw it up in the air, leaving you lost and confused, but I am sure that even those without any illness feel something similar, just not with the screaming in the back of their minds saying that the world has just ended and it will never be the same again. It also means that every few seconds I have to go to that tab and just try once more to refresh the page in the hope that this time might be the time that it normality returns. Rather than just leaving it alone until I have completed this, no that would be far too easy for a brain like mine, it has to ensure that I remain in a constant start of panic and unable to just move on and accept it as it is.

I had a tweet yesterday and a comment to on one of my posts, that both had something in common, both were from people who live alone and have little to no support when it comes to dealing with not just their illness, but life. I have at different points in my life been totally alone, yes there were people on the end of a phone if I needed to talk to someone, but there were two problems with that, firstly I couldn’t afford the cost of the call and I didn’t want to even admit that I wasn’t coping with life the way it was. I was lucky in one respect, I was still able to get out and about so I at least could see that life was going on, even though I wasn’t part of it. I don’t remember feeling lonely, but I do remember feeling totally alone, they are two very different things, especially when it comes to trying to deal with poor health. At the time I am thinking of, I was still in the reasonably early stages with my MS, it was still relapse remitting and although I do remember a flare at that time, it wasn’t debilitating to the point that I couldn’t manage to care for myself, but I do remember what it is like feeling like the world has forgotten you. It’s probably one of those things that goes back to childhood, but the one thing we all look for when feeling ill is to have someone there just to take care of us, fetch us a hot drink and tell us it will be OK, that doesn’t change with age.

When you find yourself dealing with a serious chronic condition that changes life forever, it doesn’t matter how many people you have around you, you can still feel totally alone. Most of us don’t actually know anyone who are living with the same condition as us, or are having to deal with the same issues when we are first diagnosed, the world can suddenly become a really strange place where we feel we are the only person alive who has to deal with anything like this. The only time we ever come across other is when we are waiting to see our consultants, but there is a strange thing about hospital waiting rooms, they are like libraries, everyone sits there in silence. At that early stage is we seek out other, we join chat rooms, attend meetings of the local support groups and for some that works, for others it is just not right for them, that was the group I fell into. The odd thing is, the worse our health gets, the less and less support there is out there for anyone, we once more find ourselves alone, with no one to turn to, who shares our predicament and we enter the zone of invisibility. It is a truly tough one to get around, as I know myself there is for some reason in all of us a need to be part of a group who share our lifestyles, but when our health is restricting our ability to be in contact, it actually means that others need to contact us, but no one knows we are there. All those groups and chat rooms are still out there, but when you are too exhausted, or the pain is too much to even type, you truly become alone in a way that I never thought was possible. So far I am lucky I have only touched the surface, but there have been both tweets and the comments over the last couple of years that have showen me just how easily and quickly it happens.

The conditions we have don’t really matter, the truth is one I latched onto before I started my blog or twitter, it is our symptoms and the issues they cause in our life that really matters and what we all need to know is that others have them too. It would be nice if someone had the cure for them, but I often think that if not the cure but a good placebo, is the knowledge that we are not alone, that someone somewhere understands and hasn’t fallen over dead within hours of it appearing or due to it. I don’t know if it is just the UK that has this strange thing going on where the majority of people who have chronic conditions don’t tell anyone about it. I know that in my working career that I never once heard anyone saying they had anything worse than asthma or arthritis, despite the fact that there must have been people who had a huge range of condition. I have said it several times and I will say again in the future I am sure, but if we just talked freely about our health, it would break down so many myths and falsehoods but just as importantly, those who will follow us, would already be aware of others and that feeling of being the only one on the planet would be broken down, at least in the early phases if not the later ones.

After my post yesterday I decided to see if I could find out how many people in the UK have certain conditions, I started with MS and the figure give was around 100,000, fibro 800,000, arthritis 8 million and COPD 3 million. I looked at only four conditions and the numbers alone started to prove my point, as those conditions alone represent over 5% of the UK population, worldwide 15% are disabled. The more conditions you check, the more it becomes clear that we are part of the kind of numbers that shouldn’t be ignore by anyone and whether it is in line with yesterday’s topic or today’s, if we all just made our voices heard, life could be very different and so much better, for everyone who is ill now or will be joining us in the future. Some issues are harder than others to resolve, in the UK right now there is a charity that is set up to help to break down the feeling of loneliness that the elderly go through once they are either housebound or simply no longer have the daily contact with others. It is a free phone number that they can call day or night just to have a chat, not because they are suicidal or in need of medical care, just to have a chat. It doesn’t matter if they see their families every day or every week if they feel lonely there is someone on the other end of the line happy to talk. One of the services it offers is a calling system, where their number is on a list to be called once or twice a week, one of the volunteers will call them just to see how things are and to talk about everything and anything. I can see how a similar system could be useful for all those people out there who feel alone with their failing health, setting up phone buddies, where people could be matched up to support each other through the difficult spells, were doctors aren’t what we need, just someone who understands because they too are dealing with the same thing.

 

Please read my blog from 2 years ago today – 25/10/12 – Being Totally Alone 

This is a day that is going to be dominated by my legs, they have been screaming at me since I first woke. It is almost impossible without lying down to actually remove all weight from them, it doesn’t matter how I sit the pressure builds in my thighs and joins itself to my shins and calf’s. I have joked over the years with Adam about wanting new or no legs in preference to the ones I have, this is…..